AYAs' online information and ehealth needs: A comparison with healthcare professionals' perceptions

D.L. van de Graaf*, C.P. Vlooswijk, N. Bol, E.J. Krahmer, R. Bijlsma, S. Kaal, S.H.E. Sleeman, W.T.A. van der Graaf, O. Husson, Mies van Eenbergen

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

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Abstract

Background
Adolescents and young adults (AYAs) diagnosed with cancer fulfill their cancer-related information needs often via the Internet. Healthcare professionals (HCPs) have a crucial role in guiding patients in finding appropriate online information and eHealth sources, a role that is often overlooked. Misperceptions of AYAs' needs by HCPs may lead to suboptimal guidance. We aimed to examine the extent to which AYAs' online information and eHealth needs corresponded with HCPs' perceptions of these needs.

Methods
Two cross-sectional online surveys (AYAs, n = 299; HCP, n = 80) on online information and eHealth needs were conducted. HCPs provided indications of their perceptions of AYA's needs.

Results
AYAs reported significantly more online information needs compared with HCPs' perceptions regarding: survival rates (AYA = 69%, HCP = 35%, p < 0.001), treatment guidelines (AYA = 65%, HCP = 41%, p < 0.001), return of cancer (AYA = 76%, HCP = 59%, p = 0.004), “what can I do myself” (AYA = 68%, HCP = 54%, p = 0.029), and metastases (AYA = 64%, HCP = 50%, p = 0.040). Significantly more unmet eHealth needs were reported by AYAs compared with HCPs relating to access to own test results (AYA = 25, HCP = 0%, p < 0.001), request tests (AYA = 30%, HCP = 7%, p < 0.001), medical information (AYA = 22%, HCP = 0%, p = 0.001), e-consult with nurses (AYA = 30%, HCP = 10%, p < 0.001), e-consult with physicians (AYA = 38%, HCP = 13%, p = 0.001), and request prescriptions (AYA = 33%, HCP = 21%, p = 0.009).

Conclusion
AYAs' online information and eHealth needs are partially discrepant with the impression HCPs have, which could result in insufficient guidance related to AYAs' needs. AYAs and HCPs should get guidance regarding where to find optimal information in a language they understand. This may contribute to AYAs' access, understanding, and satisfaction regarding online information and eHealth.
Original languageEnglish
Pages (from-to)2016-2026
JournalCancer Medicine
Volume12
Issue number2
DOIs
Publication statusPublished - 2023

Keywords

  • ADOLESCENTS
  • AYA
  • BEHAVIORS
  • CANCER-PATIENTS
  • DIAGNOSIS
  • ESOPHAGEAL
  • INTERNET
  • PATIENT
  • QUALITY
  • SURVIVORS
  • YOUNG-ADULTS
  • adolescent
  • cancer
  • eHealth
  • healthcare professional
  • online information needs
  • young adult

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